Wednesday, June 1

Marathon day at Mayo Clinic

Tuesday night we let Ains eat whatever she wanted since she had to fast for her sedated tests today. 
Linda bought Ains a stroller so I could push A around the airport Thursday since she likely will be sore from the muscule biopsy Wednesday. Dad and Larry put it together!
We left the hotel at 6:30 am today and headed to the hospital.
They got A settled in a room about 9:30 am. It took a while because they had to coordinate so many teams to make all of the tests happen today.
Today was the first day of a gown warming trial for kids. This is a 3M product and A loved it! Kids can get very cold/dangerously cold while sedated and with A being sedated for 5+ hours today they wanted her to try it.
They gave Ainsley a dial so she could turn it up high to low. She turned it up high and loved it! It helped her to relax and get comfy.
Ryan's parents joined me today-thankful for their help today!
Ainsley's first procedure was a muscule EMG which took 1 hour and began at 11:30 am. She then has her brain MRI and at 2:30 pm she began with Dr. Cofer for ear cleaning.
We learned later they had to switch the order of procedures to get the muscle sent to the lab in time before their 4 pm deadline. I met with her surgeon Dr. Moir at 3:30 pm and he said all went well! He only had to make a small incision for the 2 cm muscle biopsy.  He is a very well know surgeon, but what I valued most about him was his heart for the work he does. So thankful for excellent doctors and nurses!!
During the time before her procedures we met with her doctor team. We also had an amazing child life specialist-who was originally from Iowa 💛. Immediate connection-she was amazing. She prepared Ainsley for the procedures and gave her a bag full of real doctor goodies!
She spent a good amount of time preparing her for the mask sedation, but the sedation team didn't go that route.  Since they are still ruling out a muscule disorder there can be some complications with that type of sedation in kids with muscule disorders.
I truly had a peace at this time. I am normally very type A with medical stuff and have to double check everything (in my head) and then ask questions. I was completely trusting the large medical team working on Ainsley today. I can't begin to describe how comforting that is as a parent. 
For the first procedure they gave her oral sedation and then started the full sedation through IV during the last half of the procedure. 
Ainsley got SO sleepy!
She didn't let the iPad go!
I got to go back with her to the procedure room and be with her until they placed the IV.
A finished the day with a sedated hearing test-good news, her results are stable! They want to see A tomorrow morning for a behavioral hearing test in the booth at 7:45 am! They want as many results as they can get. We'll then meet with another ear surgeon to talk about when/if we should repair her left ear drum. Then...back to the airport!!
Tonight A was so weak! She couldn't walk unassisted. I'm hoping and praying she's better by noon tomorrow when we have to navigate the airport. They said she could be a little clumsy for a day with all of the sedation she had.
Ains has been funny tonight. She's starting to get her spunk back :)! I'm so thankful for the doctors, nurses, and others on the medical team who coordinated this busy day for Ains and for our family who could be with us this week!

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